MODERATORS

I understand this isn't the biggest sub, but I think good material can make it a useful one. So I'll help get the ball re-rolling.

I'm a 15 year old boy with POTS. I was diagnosed in 2011 after two hospitalizations and one near death experience. I was unable to attend 8th grade due to the severity of my situation (brain fog was a pretty big problem). I passed out so much that I was put in a wheelchair in order to get around at all. I stayed at home mostly though due to a lack of energy. I recovered pretty much completely about 14 months later, after a lot of medication, physical therapy, and general tenacity. I recently starting exhibiting symptoms again and am undergoing quite a bit of treatment.

During my time with POTS I've learned a lot. My biggest suggestion to those of you just now getting diagnosed is to question everything your doctor does. They most likely are not well versed in the field, get a specialist if you can.

My daughter has an underlying medical condition which causes progressive brain damage. Her specialist actually just suggested that she may have dysautonomia. She is seeing a specialist in Houston in a couple months. She has always had a serious problem with temperature regulation in that she gets hot VERY easily. We once took her from the front door to the car (which was cooled off) in the middle of summer and she had an episode and went lethargic and passed out on me. We are SO careful with our awful southern summers now. She also has a bad sweating problem. It seems when she's tired or her temp is off by even a little, she just starts sweating. Her feet also get so cold and purple... I have to take off her socks and massage them to get them to warm up and be pink again.

Oddly enough I have a lot of the same symptoms and I am actually starting to question if I have this myself. Dysautonomia.. not her underlying condition, I know I don't have that.

My question to you is what kinds of tests do they run on you? My daughter can't do the tilt table test because she's on a ventilator. Is there any other tests you had to have?

What are all your specific symptoms that are related to your dysautonomia? I don't know much about it yet since we haven't been able to see the specialist.

Sorry to hear about your daughter. I have a friend with mitochondrial dysfunction which slowly is damaging his brain as well, its a terrifying situation.

I was unable to do a tilt table test for awhile as well actually, so I can provide some insight. One of the easiest ways to tell if she has POTS is to have her stand up, while tracking her vitals. If her heart rate shoots up significantly and her blood pressure starts to drop significantly then she probably has some sort of orthostatic intolerance. If she can't stand, or you can't do that for some reason I don't know too much about what they could do. Her symptoms definitely seem consistent with someone who has POTS or some form of autonomic dysfunction. I was originally diagnosed based on my feet turning purple when I stand, and my Orthostatics, along with symptoms I reported.

The list of symptoms is pretty long, this wiki article has all of the possible symptoms. I primarily experience as follows (this has changed since I was first diagnosed 2 years ago):

lightheadedness

exercise intolerance

extreme fatigue

chest pain

hypotension

tremulousness

visual disturbances

Abdominal pain

nausea

brain fog

burnout

decreased mental stamina

depression

difficulty finding the right word

impaired concentration

sleep disorders

flushing

overheating

PS: As to the sweating thing, I also sweat a lot when I sleep. Keep her hydrated, because she will lose a lot of fluids.

So the first thing is I don't know what meds you are on, but I take like 9 meds a day and they really aren't an end all solution for me. Meds help, to an extent but they simply can't "fix" you. The number one thing I would stress is live healthily.

This means eating well (3 good meals a day is super important), keeping stress as low as possible (which I know can sound difficult I'll get to that later), and try to get some amount of exercise. You definitely don't need to be super active, in fact you might feel worse if you over do it so start small if need be but try to get in some running or walking if thats all you can do.

Hydration: I can't stress how important hydration is for me. It often times means the difference between being able to go to school and not. Drink constantly. I drink primarily Gatorade because it has a lot of salt which is good, and it will hydrate you better than water but on the flip side its probably pretty bad for you and its expensive so drink whatever. I also do some coconut water, but some people don't like the taste of that. Propel is another option if you want to watch you sugar but I hate the taste. Hydration will help with brain fog a little bit too.

Psychological: This is a touchy subject, but the fact of the matter is there is some sort of emotional aspect to POTS. There is an emotional aspect to everything. Try to keep your spirits up, which is hard I know it can be really depressing. The truth is you were handed shitty cards, and to an extent you are going to have to live with this for awhile. I personally don't meditate but I imagine it would be very very helpful so give it a shot! You have nothing to use. I see a therapist as well, for a variety of things, but it took me almost 2 years to decide I needed it and I don't know if its regular for people to have therapists with this. Just try to keep anxiety down.

Things I'd stay away from: Alcohol and Marijuana are probably things you shouldn't do too much of/ should be careful with. They both lower blood pressure and raise your heart rate so you will be much more likely to experience head rushes and pass out while on them. Marijuana could in theory help with some of the aspects of POTS, but I don't know the extent of your symptoms, and it doesn't seem like thats something that you are into (based off of how driven you are at such a young age). If you do smoke or drink just be mindful when standing up, and gauge how you feel. I would highly recommend staying away from molly, cocaine, and most hallucinogens (DMT, 2cb, that kind of thing) because they raise blood pressure which will probably not be good if you take meds to raise your blood pressure already. Mushrooms should be fine, LSD probably too but I would look into it if I were you. Try not to over do it, if you feel shitty go to work and come home and relax. If you go out and try to forget about having a disability when you are having an especially bad day the day after is going to be terrible.

Sickness: Getting a cold as you probably know already, can make things a lot worse. This is mainly because of how inactive people tend to be when they are sick but also because it weakens your body. Try not to get sick, thats all I can say.

Summary: Dysautonomia sucks. It really does. And people don't understand what its like, how could they? Try to explain your disability to employers and friends, but don't identify with it. As in, don't ignore you have limits but don't let it keep you from happiness. I personally get little help from forums like dinet but if you need a support forum my mom seemed to like it when I first got sick. The good news is you have a pretty good chance of outgrowing it in your early 20s, so you may very well not have to deal with this for very long.

If you have any more questions or need me to cover anything I said in more depth I'm more than happy to.

Toby,
9 Medications! Wow! I currently take Midodrine at 5mg four times a day, Topamax for Migraines (but it makes my fac numb and tingly and doesn't help), as well as Xanax twice a day. My blood pressure is always low and my resting heart rate is usually over 100.

I also take supplements: Magnesium, a hair and nail Vitamin, and also Calcium because I take the Depo Shot for birth control.

I definitely do not drink enough!! In the past year I have gained 30 pounds, maybe from the high salt intake? I'm not too worried about the weight gain... But I had hoped it would have increased my blood pressure!!

It was so good to find this place! I loved the documentary from Dinet!

Oh my bad I actually ment meds 9 times a day, I only take 3 different medications. I would look into doubling your Midodrine if you are passing out still. I take 10mgs four times a day. But obviously don't take my word for it, ask your doctors about that kind of thing.

Having regularly abnormal blood pressure and a high resting heart rate isn't necessarily a huge problem, due to the fact that everyones body is different. I usually have a pretty low blood pressure as well and I won't notice unless it gets extra low.

I don't know anything about supplements in relation to POTS, I imagine they don't have much of an effect but who knows. Work on drinking more for sure! I try to at minimum get 64 fluid ounces a day. but usually I go for in the 80s. I also have 3 infusions a week though so that hydrates me quite a bit.

My cardiologist was discussing upping the dose of Mitodrine, hopefully that would help.

I am supposed to drink like 96 ounces of water in a days time. I have never been able to do this. After reading so much here and on Dinet, I am going to look into Powerade.

I don't have any choice but to do my best to live a normal life. I have to work and take care of myself... And I think that sometimes my stubbornness is the only thing that keeps me on my feet sometimes.

The magnesium was prescribed by my cardiologist. Evidently it's got something to do with autonomic nervous system. He is the only specialist in my area that is on the list of doctors who know what they are doing, on Dinet.org.

My heart rate escalates when I am standing and my blood pressure drops excessively. During my Tilt Table exam, my heart rate was 190+ and my blood pressure dropped to 58/43 when I was still conscious. They said I was pretty tough!!

I am having a really hard time dealing with the heat. It has been in the 90's here where I live, and I can't stand it at all. I feel on the verge of fainting at every moment. I can't even clean my house! It's very scary when I have to leave the house in the heat... I've never passed out while driving, but I am afraid of going anywhere alone when it so hot. Who would help me if I went down? You know? It sucks big time.

I have read about cooling clothes, have you ever tried them? Do you have any heat intolerance issues? I spent all of yesterday afternoon reading a book in a bath tub with ice, and my AC on full blast.

I really have to learn to live with this problem... Because I have no other choice. I HAVE to live and work and try as hard as I can to be normal...